In March 2025 the Department of Health and Social Care (DHSC) will publish a cross-government delivery plan for ME/CFS, aiming to improve attitudes, bolster research and better lives. The process towards the plan began in 2022 and included a public consultation, which made clear how the health system is failing people with ME, with inappropriate attitudes, “lack of compassion”, inaccessible care and poor implementation of NICE guidance.
While DHSC’s interim delivery plan focused on England only, the public consultation was open to all UK residents and devolved governments have been involved in the process to consider common approaches.
The delivery plan represents an opportunity to establish clear steps towards a long-overdue transformation in care and research, so that the NHS can truly be there for people with ME, including those who have developed the condition as part of Long Covid. However, our position from #ThereForME is that the Delivery Plan requires ambition, clear targets and resourcing in order to make a real difference. You can read our recommendations for the Delivery Plan here.
#ThereForME has been invited to join the Task and Finish group convened by DHSC, which is providing feedback as the Delivery Plan is finalised. DHSC has given us permission to share the full list of organisations and individual representatives invited to join the Task and Finish group - which we’ve included below.
Government departments and arm’s-length bodies:
Department for Education (DfE)
Department for Work and Pensions (DWP)
Department of Health and Social Care (DHSC)
National Institute for Health and Care Excellence (NICE)
NHS England
Northern Ireland Government
Scottish Government
Welsh Government
Other organisations:
#ThereForMe
Action for ME
Action for ME - Representative with lived experience
Allied Health Professionals Federation
Association of British Neurologists
British Association for ME/CFS
British Association of Clinicians in ME
British Dietetic Association
British Psychological Society
Cardiff University
Chartered Society of Physiotherapists
Doctors with ME
Forward ME
General Medical Council
Great Ormond Street Hospital for Children NHS Trust
London School of Hygiene and Topical Medicine
ME Association
ME Local Network (MELN)
ME Research Collaboration Patient Advisory Group with lived experience of ME
ME Research UK
Medical Research Council
Medical Schools Council
National Champion for Social Prescribing
National Institute for Health and Care Research (NIHR)
Newcastle University
NHS Commissioner
NIHR Biomedical Research Centre
Quadram Institute Norwich
Royal College of General Practitioners
Royal College of Nursing
Royal College of Occupational Therapists
Royal College of Paediatricians and Child Health
Royal College of Physicians
Royal College of Psychiatry
Sheffield ME Charity
Social care and social work representatives for children’s and adult services
Specialist ME/CFS doctors
The Morten Group, University of Oxford
Tymes Trust
UK M.E Research Collaborative (MERC) Patients Advisory Group
University of Edinburgh
University of Liverpool
University of Manchester
Other individuals:
Invited expert
Lived experience representative
Does anyone know who the British Association for ME/CFS is? ( It’s listed above BACME, but google isn’t bringing up two different orgs).
I also wonder who from the different universities is contributing? Interesting to see my local University listed (Newcastle).
Why are 25% not on the list? Why are LocalME not there nor have been invited.